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Rare Disease Day 2021 brings together patients, stakeholders

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Did you know that approximately 1 in 20 individuals will live we a rare disease at some point in their life? According to National Organization for Rare Disorders, more than 7000 rare diseases are affecting the lives of more than 30 million Americans. It doesn’t seem so rare when you put it in terms like that.

But despite how many people are currently suffering and how many will eventually suffer from a rare disease, the research and therapeutic options for many of these diseases are lacking.

On Rare Disease Day –traditionally held on the last day of February– the rare disease community comes together to make their voice heard and raise awareness of the impact rare diseases have on patients’ lives.

The first Rare Disease Day, which took place in 2008 with 18 different countries participating, had a focus on making rare diseases a public health priority. Since then, Rare Disease Day has grown exponentially with more than 100 countries now participating. Members of the rare disease community, including patient organizations, healthcare professionals, researchers, and policymakers, participate in thousands of events worldwide

This year, due to the ongoing pandemic, Rare Disease Day will be held virtually. Below are several events with a focus on rare disease research.

Focus on rare disease: Prime time — gene therapy for rare disorders
Date: March 3, 2021
Hosted by: Broad Institute of MIT and Harvard

Rare Disease Day at NIH
Date: March 1, 2021
Hosted: National Center for Advancing Translational Science

Oxford-Harrington Rare Disease Day Webinar
Date: February 26, 2021
Hosted: Oxford-Harrington Rare Disease Centre

Unlocking Rare Disease Treatments with Stem Cells
Date: February 24, 2021
Hosted: NYSCF Research Institute